Baby Kelley's Web Log

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Moving day...tomorrow

Date: 14 Jul 2004
Time: 12:01:51 -0700
Remote Name: 208.54.95.1
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Comments

Hello everyone!

Liam is ready to go. We originally thought that he'd be able to head up to CHOP right away on Monday. However, no beds were available in the CICU there, so we found ourselves in the typical "hurry up and wait" situation. On Tuesday the unit at AI called CHOP to check on the status and there was still nothing available. Today is Wednesday and we now know that he will be transported tomorrow morning sometime.

I just got off the phone with Liam's cardiologist at CHOP, Dr. Wernovsky, and he said that they have already discussed Liam's case and will perform their own analysis when he gets up there. So tomorrow, they will be doing an echo to verify AI's reports and on Friday they plan on doing a cath.

Friday's cath will involve the standard diagnostics, but they'll also be doing a test-occlusion of Liam's Pulmonary artery valve. If this is tolerated, they'll likely put in some kind of permanent occlusion to see if this helps with keeping his pulmonary pressures down. We may have mentioned this to you before, b/c the docs at AI also considered it.

Dr. W also mentioned other options and I mentioned to him Mitral valve replacement (which is something Dr. Baffa had spoken to us about). He seemed to think that that could be an option, as well as rerouting the hemi-fontan circulation to alleviate pulmonary pressure. All of that was mentioned as potential future options, though, and like everything we've learned here, everything is contingent on the _next_step_. So, in Liam's case, the next step is the cath this Friday.

Dr. W, like the docs we've spoken to at duPont is not overly-eager to be jumping to the transplant right away. His philosophy, and we agree, is that they should keep transplantation as a reserve option - a path to go down only after the other options are explored. However, since they have the ability and facilities to do transplants at CHOP, the option remains viable, and we know we'll be in the right place tomorrow.

Take care all,

The Kelley Family


Last changed: 07/14/04